As I stood before the mirror and examined the fiery red flesh that formed a reversed question mark on the right side of my head, my wife slipped up behind me and wrapped her arms around my chest.
"You know, you will never be able to wear your hair the same again," she said and ran a hand gently across the half inch of hair that had grown in the two months following the second surgery.
"What do you mean?"
"You never really had a well-defined part in your hair to begin with and since they shaved your head, I'll bet your hair has completely lost its memory."
"Could be. Do you think you can get used to making love to hair this short?" I asked in an attempt to draw a look of exasperation from her.
"The hair I can deal with. You really need to get some muscle tone back, though," she said and ran her hands over my shoulders and down my arms. "This feels like it belongs to a little boy. I miss the muscles. A month of inactivity has wiped you out."
"In more ways than one," I said and winced at a twinge of pain above my right ear. The headaches were backing down some, but they still gave the occasional reminder that I wasn't yet at one-hundred percent.
After thirteen years of suffering under several neurologists, I and my then-fiancé made the decision to try and treat my epilepsy by excising the source of the problem, namely a large bruise on the surface of my brain, sustained while sitting on the bench at a little league game in the path of a foul ball. Following the two-surgery procedure that kept me in the Cleveland Clinic for close to a month, I was sent home to recover in familiar surroundings.
The look on my wife's face spoke concern for the pain I was feeling, but there was something else that remained unspoken. She desperately wanted to say something, to help balance out my pain, but was hesitant to do so for the same reason you never speak a birthday wish out loud before blowing out the candles. Never tempt fate.
"Go ahead and say it. Someone has to eventually," I said as I pushed on the puffy area above my ear, feeling the squish of cerebral-spinal fluid that had leaked out of my skull and pooled beneath the scalp. It wasn't a dangerous development, but it could be distracting in the extreme.
"Do you realize that today makes sixty days since you've had a seizure?"
I had realized the developing trend a month earlier and this new mile marker did not serve to diminish the confusion I was feeling. Logically, I knew that I had every reason to be ecstatic about the news, but the longer I went without a seizure, the less happy I felt. Strange the way receiving that for which you most long rarely produces the sense of fulfillment you thought it should.
"Yes, I know," I said in a tone that gave away my mind set. "And please don't look at me like that. I've lived with seizures as a part of my daily routine for thirteen years. Facing the possibility of never having one again is kind of scary. I know it's why I had the surgery, but try and imagine suddenly never having your period again, keeping in mind the hormonal upheavals that are implied. Isn't the thought just a little frightening?"
"Bad example, since it would mean I was either pregnant or finishing up menopause. But I can imagine some uncertainty over the sudden change. And I called the clinic yesterday to ask your doctor about this because I sensed that you might be feeling this way. Would you believe she said this was stress related?"
"Hm. I guess I would. Since a seizure was my way of dealing with stress, I never developed coping mechanisms for stress that life generally forces people into acquiring. Did she have any suggestions?"
"Oh yes. Lots and lots of nookie."
For some reason my mood suddenly improved. The last time I had had this prescription filled was a day before my second surgery and a nurse who was curious regarding the noise coming from the shower managed to all but spoil the moment. She was totally unsympathetic to our need for intimacy prior to a potentially dangerous surgery and scolded us for trying this in the shower, reciting a long list of safety concerns.
"I apologize for any broken rules, but for the length of time I'm here, it's my potty and I'll try if I want to."
Sometimes there is no point in even attempting humor.
"So how often do I need to take this medicine?" I asked hopefully.
"As often as necessary, I suppose," she said, forcing a smile. The lack of genuineness in her smile concerned me, and I had some idea of why. Before the surgery I had done too much homework into potential outcomes. Some of the post-surgery studies had shown changes in the personalities of the principal players. I had fixated upon this element and voiced concerns over possibly no longer loving her as I had before surgery. I could see that she was looking at this discussion with the doctor as a way of protecting her investment, and I had never intended for her to draw this feeling from anything I may have read or said. I simply look for the worst-case scenario in any situation in order to be ready for it.
Damage control of this situation was lengthy and had to be sustained for quite a while. At present, I still hear about my concerns that never came to pass, but that had frightened her in a big way. And for my own part, I will occasionally remind her of a suggested stress management technique whenever work gets to me and I am feeling tension in need of release, though in the fifteen years following my surgeries, I'm sure I've developed other coping mechanisms. Of course, I will never admit to this.
Have you ever noticed that when you talk to folks who have weathered hard times or trying situations, years later it is those situations that they look back on with the greatest fondness? I guess it isn't the bright days and sunny afternoons that prove love. That proof comes in times of darkness when the darkness fails to overwhelm and fracture.
And it reminds us of its enduring nature at the oddest of moments. I began this reminiscing shortly after my son opened his health book in my lap and told me that they had been discussing non-infectious diseases like eplidepsy in school today. My wife and I looked at each other and smiled at the mispronunciation.
"Do you want to know about epilepsy,
Caleb? Have a seat and I'll tell you a story."
© 2002 Bill Schwan, all rights reserved
appears here by permission
This is just a recollection of events from 1987, recalled for the benefit of my son's grade in health. Health textbooks still have a 1950's view of epilepsy that needs to be amended.